TMJ Experience

by Band on the Run 11 Replies latest watchtower beliefs

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  Band on the Run

  I had a horrid bout about thirty years ago. The spasms were triggered by jawbone pain. It took years and untold funds to get meaningful treatment. Once the worse pain in my jaw remitted, the tmj pain calmed down. I no longer have such limitlfess funds. Internet sites recommended exercises. It was only by doing the exercises that I realized how constricted my jaw is down.

  I believe treatment is effective. The last thing I want to replicate, however, I giving hard earned money to some dentist who took a partial weekend course in TMJ. Normally, I would seek treatment from a teaching hospital but I don't feel a super duper dentist, only a competent one.

  Does anyone has any experience to share with me? I'd appreciate info and insight.
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  finally awake

  no experience, but a lot of sympathy. mouth pain is brutal.
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  Band on the Run

  TMJ is nothing compared to chronic facial neuralgia. I just want to have more savvy than last time. Lack of funds might actually help b/c I can no longer put up with b.s. from a dentist. After what I endured for decades, I am no longer impressed by credentials or a prof. degree. It does me no good unless they can deliver relief.
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  GromitSK

  Hi botr. Is it related to teeth grinding? My dentist has prescribed something called nti which is supposed to help stop the grinding which can lead to TMJ. ALso, have you considered acupuncture?
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  Band on the Run

  I went trough everything last time around. Toxicology reports, specail diets, exercise, hours with hydrocollators for moist heat, injections, appliances. The spasms prob. never came from my TMJ but rather the pain of facial neuralgia. Once the facial neuralgia was treated, the TMJ symptoms revolved.

  The m ore I remember all I went through, the more I am freaking out. It was intolerable by the time I sought help. TMJ was a niche concern. If anythiing, it became too popular. When I started, none of the my friends heard of it, including many dentists. While I was treated, every motel was offering short TMJ courses on TMJ to inflation proof a dental practice. It remains very controversial.

  I also feel that TMJ should be covered my medical insurance. It isn't really a dental disease. If I had no discretionary funds, I would be doomed. I've thought of going to a dental school to hold down cost, but in the past the wasted time was enormous.

  One good thing is that TMJ is mainstream now. Dentists are trained to see the downside of expensive treatment. My local teaching hospital refuses to call it TMJ. They used a description that would alterts no one to TMJ. It has a bad reputation. I suppose I was lucky to have access to treatment so long ago. Only a few dentists in Manhattan treated it. The wars going on bethween them were troublesome for treatment. It was ugly. A long time has passed so things are prob. much better.
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  GromitSK

  I have suffered from intermittent neuralgia myself for many years so I perhaps have some idea of the pain BOTR. It can be excruciating to the point of being unbearable at times. I am fortunate in that I tend to experience it in bouts and can have many weeks between episodes.

  If it is neuralgia, I find direct heat eases the pain for me and I have prescribed painkillers for when it is particularly bad. I have been told surgery to the affected nerves can help but the downside is potential facial paralysis and since I don't have it permanently or frequently at present, I didn't think it was worth the risk.

  I too have never got very far with medics - some of whom seemed determined it would be migraine but I know it isn't related to that. It does seem more prevalent when I am run-down and I have noticed occasionally I get some of the warning symptoms of its approach along with a cold sore. I am not sure that the following link will help but it may be worth a look: www.tns.org.uk

  I am not very optimistic about finding a permanemt fix given my own experiences but you never know. Hope you're feeling ok at the moment.
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  Band on the Run

  Nieuralgia makes TMJ seem as the slightest possible discomfort. Are we talking about trigeminal neuralgia? The leading surgeon in the country was consulted. He said that b/c my pain was bilateral surgery would not help. The solution appeared to come from hematology. My blood tested as subclinically sticky which impeded blood flow to the jaw. When surgeons opened my jaw, the X-rays appeared normal but most of my jaw was so necrotic that only dust remained.

  If it is episodic and rare, doing nothing may be the best policy. I underwent about 30 surgeries. They curetted the bone over and over again. I would obtain excellent pain relief at the site but the pain moved to another site. It is unclear to me what happened. My life was affected in so many horrid ways. I will !@#$%^&* now but then I remember what constant agony was like and I thank God for relief. My worse day now is so much more better than my best day back then.

  I feel that I learned so much that can help others. For a book or article to work, however, my personal experiences are impt. My WT upbringing makes me feel that somehow I sinned to be so ill. Do I have revealing and over the top stories to relate. I would have given anything to read of someone else's experiences navigating another person's experience with an orphan illness. Being female did not help. I was accused of so much with no proof. One major fear is that if I recount some tales, the pain will return.

  I am so academically oriented. It was necessary for me to do what Harvard and other prestigous centers told me not to do. With my personality, it was very difficult for me. The deferential training from the WT has been a thorn in my side in professional and health concerns.
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  GromitSK

  I am so sorry to hear how things have been for you BOTR. It sounds like utter torture.

  I think mine is trigeminal but doesn't quite fit the pattern. I also think the medics are often guessing at the cause and most of the proposed solutions are pretty medieval. I often find folks have no idea what it is when you mention it and think it is some kind of 'headache'. We wish! I often %#! when it spasms too so ur in good company. I think writing about your experience is a great idea as the condition is not well understood or even recognised generally. I suspect many suffer in silence, particularly where it is relatively mild and not debilitating. A medical scientist I know expressed the opinion that it is amongst the worst type of pain and that there are really no analgesics that are fully effective.

  How folks who have it permanently cope, I do not know. I don't think I would be able to bear it.
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  Band on the Run

  I've read that it is worse than terminal cancer pain with a suicide rate in excess of 95% ! Fear of death kept me from killing myself. My mom was told there was no hope and that I would kill myself. I was never told anything. No health prof'l ever looked at me in the manner. Something was very wrong. Legally and ethically, they were supposed to be honest with me. It was years before my mom told me and only b/c a doctor who said it hopeless proposed iffy treatment to make money.

  I was convinced of the miracle of modern medicine and the allure of prestigious hospitals. My view is very different now. Medicine is art more than science. I assumed the risk of seeking any possible treatment after a while. I knew research was being done in W.Va. My imagine of W.Va. was a bunch of hillbillies. How could any md there know anything? My attitude postponed relief. All these dentists were stirring up law suits against one another. My legal training helped a lot. I had to conform to their culture.

  I do run into people who have family who suffered a similar problem. My case was very bad. I suspect more people suffer but are lost in the ignorance surrounding the condition. The major change in my case was politcal. I never got very far with dentists. A nationally reknown oral pathologiest became involved. His reputation is huge so he can survive law suits. They looked to other parts of the body and a hematologist did research. Treating my blood helped resolve the pain.
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  GromitSK

  I am really glad you have made progress.